6 Interesting Facts About Lewy Body Dementia

Lewy body Dementia, or Dementia with Lewy bodies, is the second most common type of progressive Dementia following Alzheimer’s disease. The disease is characterized by protein deposits in nerve cells in the brain regions that control thinking, memory, visual processing, and motor control.

In this article, we’re taking a deep dive into Lewy body Dementia to explore its origins, symptoms, and treatments and therapies that can help you or a loved one navigate your Dementia journey.

Fact #1: Lewy body Dementia is one of the primary causes of Dementia in older adults.

Usually beginning after age 50, Lewy body Dementia affects more than one million people in the United States. Experts have discovered that it appears to affect more men than women, making gender one of the primary risk factors. Other risk factors include advancing age and a family history of Lewy body Dementia or Parkinson’s disease.

Fact #2: Lewy body Dementia is named after the scientist Fredrich H. Lewy.

While researching Parkinson's disease in the early 20th century, the German-born American neurologist Friedrich H. Lewy discovered abnormal protein deposits on the brain later called Lewy bodies. When these Lewy body proteins build-up, they can disrupt the brain's normal functioning and cause problems with how the brain works, affecting memory, movement, thinking skills, mood, and behaviors.

Fact #3: Lewy body Dementia is a progressive disease with a range of cognitive and physical symptoms.

The symptoms of Lewy body Dementia emerge slowly and gradually worsen with time, making it a progressive disease. In the early stages, people living with this type of Dementia may experience mild symptoms that allow them to function relatively normally. As the disease advances, people may notice changes in alertness and attention or movement and posture, including confusion, hallucinations, and muscle stiffness. In the later disease stages, people living with Lewy body Dementia often depend on others for assistance and care.

• Fluctuating alertness and thinking functions
• Repeated visual hallucinations
• Parkinsonian symptoms
• REM sleep behavior disorder, where people act out dreams while sleeping

Fact #4: Lewy body Dementia can be hard to diagnose.

There is no single test to diagnose Lewy body Dementia. Doctors diagnose the disease by ruling out other conditions with similar symptoms. For instance, Lewy body disease shares similar symptoms with Parkinson's and Alzheimer's diseases, causing experts to speculate that it might be related.

Lewy body Dementia diagnostic testing may include neurological and physical exams, mental ability assessments, blood tests, brain scans, and heart tests. In addition to the test findings, a Lewy body disease diagnosis requires a progressive decline in thinking abilities and two of the following:

Fact #5: Currently, there is no cure for Lewy body Dementia, but treatments and therapies can help alleviate the symptoms.

Doctors often use medications to help people living with Lewy body Dementia. Alzheimer’s and Parkinson’s disease medications can treat neurological and physical symptoms, while other medications can offer relief from sleep and movement problems.

Some people living with Lewy body Dementia find non-drug approaches helpful, such as modifying the environment to reduce distractions, receiving soothing responses for reassurance and following daily routines with simple tasks.

Physical, occupational, speech, and mental health therapies can also play a role in symptom relief.

Our Ginny Gives grant program provides other healing therapies that help people connect through art, music, dance, and touch.

Fact #6: There are many supportive resources available to help people living with Lewy body Dementia and their families and caretakers.

Our supportive resources provide much-needed information, local resources, and life-enrichment programs to enhance the lives of individuals and families affected by Lewy body and other types of Dementia, including:

• Truthful definitions to expand your vocabulary

• Care education to guide your decisions

• Dementia help resources to further your understanding and learn how to help

• Brain health information from reliable and trustworthy sources

• Relevant and topical streaming program for individuals and caregivers.

• No-fee memorial registration to pay tribute to a life well-lived

To learn more about our programs and offerings that can help people living with Lewy body disease and other types of Dementia, contact us online or call 1-800-DEMENTIA (1-800-336-3684).

Important Notice: Dementia Society of America (DSA) does not provide medical advice. The contents are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis, or treatment.

Take into Consideration: Planning for the Long Term

Much of Dementia care boils down to anticipating and planning for challenges you will face.

As a first step, the person or persons responsible for a loved one's care must have the legal rights to do so. Legal permission involves becoming the designated power of attorney (POA), or under certain circumstances, the conservator and guardian.

The amount and type of long term care your loved one needs is one of the first decisions you and your family will make.

Concerning home care, who will be the primary caregiver? What happens if it becomes neither realistic nor safe to shoulder caregiving responsibilities alone? Is the next step hiring a paid caregiver? Is the paid caregiver one that you hire or one contracted through a home care service? What are the criteria that make it necessary to transition your loved-one from home to an assisted living facility?

Some individuals fervently believe they will be his or her loved one’s caregiver throughout the illness. However, as is often the case, circumstances change. Therefore, you must anticipate and plan for modifications in the type and amount of care your loved one may eventually need. 

Research the options before you need them!

Contact your friends to discover if they know of a reliable caregiver or affordable homecare support. Look into non-profit organizations that provide various types of home care services. Visit assisted living facilities, speak with the director, ask about the services included in their monthly fees, view their inspection reports, and tour the facility. Learn the differences between a continuum of care, independent living, assisted living, and memory or dementia care. Become familiar with the steps you must take before you can place your loved one in an assisted living facility.

It may be months or even years before you come to this cross-road. However, doing your homework will minimize the time and stress of needing to take, often on short notice, this big step.

Developing the “what, if then, or buts” of medical care is another feature of a long-term care plan. Will your loved-one receive care from his or her family doctor or a Dementia care specialist? Research palliative and hospice care to be sure that preconceived ideas do not color your views. Learn about the purposes for palliative and hospice care, the best time to initiate them, and how they impact quality-of-life and end-of-life care. These last decisions are prone to family conflict and long-lasting feelings of ill-will.

A long term care plan includes funeral arrangements as well as various estate considerations. It’s not ghoulish to plan for the funeral. Cremation, embalming with or without embalming fluid, and burial location – are a few of many examples of the difficult and emotional decisions families make.

Prepare yourself for the eventual transition from caregiver to the representative of the estate. What are the responsibilities and the steps you must take to close the estate?

A long term care plan helps families navigate the challenges that dementia care present. Be sure to frequently review, update, and revise your loved one’s long term care plan.

Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of “An Unintended Journey: A Caregiver's Guide to Dementia.” Available through Amazon.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of the content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org